Speaking Out About Autism
The views of WA children and young people with autism
July 2020
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Recognising Aboriginal and Torres Strait Islander people
The Commissioner for Children and Young People WA acknowledges the unique contribution of Aboriginal people’s culture and heritage to Western Australian society. For the purposes of this report, the term ‘Aboriginal’ encompasses Western Australia’s diverse language groups and also recognises those of Torres Strait Islander descent. The use of the term ‘Aboriginal’ in this way is not intended to imply equivalence between Aboriginal and Torres Strait Islander cultures, though similarities do exist.
Disclaimer
This report has been prepared by the Commissioner for Children and Young People and is intended to provide the views of the young people who participated in the consultation. Any errors of omission or commission are the responsibility of the Commissioner for Children and Young People.
Both terms ‘autistic person’ and ‘person with autism’ have been used throughout this report to respect the choice of language that individuals used about themselves.
Suggested citation
Commissioner for Children and Young People WA 2020, SpeakingOutAboutautism-the
viewsofchildrenandyoungpeoplewithautisminWA, Commissioner for Children and Young People WA, Perth. Alternative formats
On request, large print or alternative formats can be obtained from:
Commissioner for Children and Young People
Ground Floor, 1 Alvan Street, Subiaco WA 6008
Web: ccyp.wa.gov.au
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Message from the Commissioner Children and young people have individual differences and no two children are the same. Similarly, children and young people with autism1 are a diverse group that each experience different challenges with communication and social interactions, and for some, repetitive behaviours. The health and wellbeing of children and young people with autism is important, particularly given the limited understanding of autism spectrum disorder and a lack of research into how it affects the growing number of children and young people diagnosed with autism each year. All children and young people have the right to be heard on the issues that affect them, as outlined in the United Nations Convention on the Rights of the Child. The national discussion around the current system of autism diagnosis, intervention and support and the associated need for a National Autism Strategy, led by the Senate Select Committee on Autism, was an opportune time to seek input from autistic children and young people themselves on what they found helpful to develop their lives and any ideas they had to improve their life experiences.
My aim in preparing this report is to ensure that Western Australian children and young people are a part of this national discussion. The views of children and young people expressed throughout this consultation have been shared with the Senate Select Committee on Autism.
I would like to thank the 12 children and young people who shared their experiences and views so openly for our consultation and I also acknowledge the family members and support workers who supported them in doing so.
Children and young people with autism have the right to timely, effective services and supports and to be empowered to make their own decisions about the autism specific interventions they receive to improve their everyday lives and increase their chances of enjoying more independent and empowered lives.
Colin Pettit
Commissioner for Children and Young People WA
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Role of the Commissioner
The Commissioner for Children and Young People works closely with children and young people, their families, community and government to improve the wellbeing of children and young people up to the age of 18 years across Western Australia. To do this, the Commissioner undertakes consultations, projects and research, and publishes reports and resources to positively influence legislation, policy, services and attitudes impacting children and young people.
The work of the office is guided by a set of principles as outlined in the Commissionerfor ChildrenandYoungPeopleAct(the Act) 2006,which state that:
children and young people are entitled to live in a caring and nurturing environment and to be protected from harm and exploitation the contributions made by children and young people to the community should be recognised for their value and merit the views of children and young people on all matters affecting them should be given serious consideration and taken into account parents, families and communities have the primary role in safeguarding and promoting the wellbeing of their children and young people and should be supported in carrying out their role.
The Commissioner must have regard to the United Nations Convention on the Rights of the Child and give special consideration to children who are Aboriginal and who are vulnerable or disadvantaged for any reason. One of the key functions of the office is to ensure that all children and young people have the opportunity to participate in the making of decisions that affect their lives, and to encourage government and non-government agencies to seek the participation of children and young people appropriate to their age and maturity. The Commissioner also has roles in monitoring the way in which government agencies investigate or otherwise deal with a complaint made by a young person, and in monitoring and reviewing written or draft laws, policies, practices and services that affect the wellbeing of children and young people. The prevalence of autism in Australia
Autism is increasingly prevalent among children and young people with an estimated 160,000 children and young people currently affected by the lifelong complex developmental disorder of autism in Australia. The current overrepresentation (83%)2 of children and young people aged under 25 years in prevalence data may be explained by historically inconsistent diagnostic protocols, the lack of research or inadequate records to track the disorder.3 The Australian Bureau of Statistics (ABS) suggests that another reason for the lower rate of adults in autism data may be due to the lower life expectancy of people with autism.4 Therefore the need to improve life outcomes for children with autism is imperative and a National Autism Strategy that coordinates a best practice approach to investment and services could support this.
Around 90 per cent of autistic people aged over five years with a National Disability Agreement (NDA) require support with interpersonal relationships and communication, and help with education.5 Not all autistic people have a disability, however in 2015, 64.8 per cent of people with autism reported that the disorder caused them profound or severe disability.6 Constituting 32 per cent of all National Disability Insurance Scheme (NDIS) participants, autistic people represent the largest primary disability category while commonly experiencing other forms of disability including: intellectual, psychiatric, learning or attention deficit disorder, speech, physical or neurological disability.7 8 4
Western Australian context
In 2019 there were 8,725 West Australians with a primary disability of autism, representing 36 per cent of NDIS participants in the state, which is four per cent higher than the national rate.9 The Western Australian Autism Register10 places WA in a unique position, being the only registry of autism diagnosis in the country which confidentially collects data about new diagnoses, specific autism conditions and demographical information. Children and young people are diagnosed using consistent practice called the Autistic Diagnostic Guideline11 and are recorded on the WA register to collect data and expand an evidence-based understanding of autism.
While autism amongst children is common, the disorder is not well understood. Early signs of autism can be identified in babies as young as one who may exhibit traits such as struggling to relate or communicate with others, difficulty in reading social cues, or obsessive behaviours such as flapping hands, or repeating sounds. Some children with autism may experience amplified sensitivity to stimuli such as sound, touch or sight, or they may respond in a minimal way to the sensory world.
Children and families report that a diagnosis of autism improves their lives, however without a solid understanding of the condition, detecting the developmental disorder can be problematic as the highly nuanced conditions of autism may be overlooked. More robust research into the causes and intervention of autism is needed, and more readily available evidence-based information is required to effectively improve understanding of autism.
Families of children displaying early signs of autism can be placed under a great deal of emotional, mental and financial stress as they navigate the complex system of assessment and intervention while trying to provide the best level of care for their children. While there is limited evidence for the efficacy of early interventions for children under the age of four years, it is widely accepted that children who receive early intervention for autism symptoms, that include tailored supports and strategies, are better equipped to deal with educational transitions, the workplace and participation in community activities.12 Commonly, children and young people failing to meet developmental milestones do not receive funding for targeted intervention to improve their conditions until after a diagnosis, leaving many children and families unsupported.13
Furthermore, the mental health of children and young people with autism requires close attention and they need to be adequately supported at all times to cultivate positive and enduring growth and wellbeing. Autistic children and their families need equitable access to information, advocacy and resources from pre-diagnosis and through all life stages. Project overview
On 27 November 2019 the Australian Senate resolved to establish a Select Committee on Autism (the Committee) to inquire into and report on the services, support and life outcomes for autistic people in Australia and the associated need for a National Autism Strategy.
The Commissioner commenced discussions with local stakeholders to plan a consultation with children and young people with autism about a range of issues relating to autism – including diagnosis, education, health and mental health, employment, social inclusion and community engagement, justice and rights, housing and their experiences with the NDIS.
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The aims of the project were to:
ensure the voices of WA children and young people with autism were considered in the submission to the Committee promote the views of autistic children and young people to service providers/ stakeholders and the wider community.
The consultation was promoted widely throughout March and April 2020 via the Commissioner’s website, direct contact with relevant stakeholders, youth advisory networks and social media.
Hearing directly from children and young people with autism can be problematic in itself because they are often inaccessible to the standard consultation processes and may face barriers to communicating their experiences. Therefore external stakeholders with relevant expertise were involved in the consultation strategies and ethical considerations for consulting with children and young people with autism to ensure that these aligned with best practice.
Given the consultations took place during March and April 2020, at the peak of concern and restrictions relating to the COVID-19 pandemic, the Commissioner’s office continually evaluated risk in line with current health authority recommendations. To minimise risk to participants and adhere to health recommendations, the consultations largely took place through video interviews.
Participants needed to be aged between eight and 25 years and have a diagnosis of autism. An information sheet outlined various ways in which children and young people could choose to be involved.
Consultation questions were open, flexible and asked for their views about belonging, their level of participation in making decisions in education and employment, and within community and support agencies they receive services from. Feedback was gathered through face-to-face and video interviews. The option to respond via an online survey was not taken up by any of the participants.
A total of twelve children and young people aged from nine to 24 years participated in the consultation. All of the participants were based in the Perth metropolitan area, four were female, and no participants identified as Aboriginal or culturally and linguistically diverse. A number of participants were recruited directly through their involvement with an autism service provider and these young people took part in group video interviews.
The participation rate was consistent with similar consultations elsewhere with equally low numbers, including 2019 research by Macquarie University14 (12 family members of 16 autistic children and young people from Australian Capital Territory, Victoria, New South Wales, Queensland, the Northern Territory and the Torres Strait Islands), and the Commissioner’s 2013 Springboard Youth and Autism Community Centre consultation15 (17 young people with autism from the metropolitan area of Western Australia).
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Key themes
All of the twelve children and young people who participated had positive experiences of autism and supports to help them overcome challenges, and were able to communicate with minimal assistance. The participants had various life experiences yet reflected similar themes throughout the consultation relating to their autism conditions.
The main issues that were important to these children and young people in regards to autism were:
being listened to, encouraged to make decisions and to contribute having an autism diagnosis having access to health and mental health services that understand autism inclusion and support in education equal access to employment and fair treatment in the workplace support to live an independent and successful life social connections and access to community activities having greater understanding of autism in the wider community support people who are respectful, well-informed and capable of taking action having a more effective NDIS.
Being listened to, encouraged to make decisions and contribute
The feedback from participants about the consultation was that they appreciated the opportunity to have a say and to be listened to in a way that respected their individual needs and experiences.
“Kidshavetobegiventheopportunitytosaysomething.Ithelpsifmorepeoplehave asayaboutwhatit’slikewithautismandthenwithmorepeopletalkingaboutit,then thatcreatesalargervoice.”15 year-old
“Yeah,adultsneedtolistentousmore.”11 year-old
“Ifthey’remadetofeelcomfortableaboutspeakingabouthowtheyfeel,makesure theyunderstandandmakesuretheycanspeakontheirownchoice.”21 year-old
They also said they want to be asked about what they need and appreciated it when their views are taken into account.
“Alsogivingthemtimetospeak,becauseoftentheygetcutoffbyotherpeople talking.Yeahtheyneedthetimetospeakandtheyneedthetimetobelistenedto.” 22 year-old
“Givethemtheopportunitytosaysomethingandnotjustignorethemforwhatever reason…likegivethemtheopportunityandlistentotheiradviceonhowtohelp them…yeahencouragement.”15 year-old
The importance of autism diagnosis
Children and young people emphasised the importance of having an autism diagnosis in terms of understanding themselves, validating their experiences and growing their confidence.
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“BeforemydiagnosisIthoughttherewassomethingwrongwithmebutaftermy diagnosisIrecognisedIwasjustanormalpersonwhohasautism…Therewasnothing wrongwithme,Ijustwasn’taneurotypicalpersonthat’sall.” 22 year-old
“Havingadiagnosishelps…havingakindofclaritytosortofanswerquestionsabout thedisorder.Yeah,thatputsthingsintoperspective.Ithinkadiagnosismakesit easierbecausenowIknowwhatthetraitsmeanandwhattraitsIhave…likethe questionsIhadaboutwhyIwassoweirdwhenImadesocialcontact.”15 year-old
Participants experienced more constructive responses from others after diagnosis and were thankful when carers and service providers showed they understood their individual needs and acted competently to support them.
“…whenIdidn’tknowIhadautisminYearOneIkeptongettingintroublebecauseI wasgettingtooexcited…AndIkeptoncallingout,thatwasthethingIgotintrouble for…andteacherswouldjusttellmeofflikeIwasnotanautistickidbutnowtheyjust remindmetoraisemyhand.” 9 year-old
“[Anautismdiagnosis]hasgivenmequitealotofunderstandingandnowIknowI haveit,it’smadeiteasierformeandmadeiteasiertorelatetoothersIguess…it solvesquitealotofquestionsIhadaboutmyselfandclearedupsomethings…
Understandingthedisorder.Yeah,otherpeopleunderstandingitmoreandyourself
understandingit,whichhelpsalot.”15 year-old
Access to health and mental health services and supports
Being physically and mentally well was extremely important to the participants in the consultation.
“I’mlucky,myfamilyishealthy.Weeatgoodfoodandexerciseandstuff…Yeah,it’s reallyimportant.”9 year-old
Children and young people recognised that to have positive health and wellbeing, they need access to the highest level of support, as well as fair treatment from consistent, respectful and knowledgeable people. Several participants reflected that they were best helped by professionals who were fun, caring and demonstrated an understanding of autism.
“Myspeechtherapist…she’sawesomebecauseIusedtohavealisp,likemytongue wouldgo‘thhhhh’,infrontofmyteethlikethatandshetaughtme…andweplayeda fewgamesaswelltohelpanditwasreallyfun.”9 year-old
“When[themedicalprofessionals]treatyoulikearealperson,thentheyhelpyou.It’s theoneswhodon’tevencareenoughaboutyoutoaskwhat’sgoingon,they’res**t!” 24 year-old
“[Medicalprofessionalsshould]tryandmakeitnotasawkwardaspossible.Like, forgetthestigmaaroundit.Knowingtheirtraitsandsymptoms,likeindividuallyand maybegettingtoknowthemabit,andIguessmakeitascomfortableaspossiblefor them.”15 year-old
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“IhaveanOT…Shehookedmeupwithanotherfriendwho’smyclosestbuddy.She’s playedapartinmymakingfriendsandhashelpedmetofindmyclosestfriend.”24 year-old Participants also indicated that processes should be more accessible for young people and they need help to navigate and link in with health and mental health services. “Inmyviewifyou’regoingtoaskaquestion,makeitanswerable.Especiallyquestions onforms,ifthey’reriddledwithambiguityit’sareallydifficultscenariobecauseyou havetoansweraquestionthatyoudon’treallyunderstandwhattheywantfromyou.” 19 year-old Mental health was an area of significance for children and young people in the consultation, who said they felt supported when professionals took their ideas and concerns seriously and helped them to adopt practical strategies to improve their conditions. “Mostofthetimeit’stechniquesonlike,socialinteractionandsuch.Itdefinitelyhelps me…[MypsychologistandI]havebeendoingabitofmindfulnessstuff,we’velike discussedrelaxationandstuff.Tryingtocalmyourselfdown,distancingyourselffrom thebothersinlifeandsuch.Sothatspacesortofhelpswhenyou’reinasocial situation.”15 year-old “Iseeatherapist.Likeonedayeveryschoolweek.Theycomeintoseemeat school…weplaysomegamesandtalkaboutmoods…thezones[of regulation]….It’s prettyhelpful.”9 year-old “Formepersonallyit’saboutforgettingthatIhaveautismandforgettingaboutthe symptomsbecausesometimeswhenyou…thinktoomuchaboutthesymptomsitsort ofmakesyourbrainfollowthem,somostofthetimeIjusttrytoforgetaboutthem andthenIcanfunctionbetter.”15 year-old One young person recalled a mental health service that did not demonstrate autism awareness and therefore did not provide quality of care. “Ihadsomementalhealthissuesanditdidn’tgetbetteritgotworse.” 18 year-old Inclusion and support in education
Feeling safe, supported and included in education was important for all of the participants. Participants agreed that a successful learning environment included respectful educators, safe physical spaces and a culture of inclusion. They said they want to have good friends at school, have their achievements acknowledged, and be physically, socially and emotionally safe. Children and young people with autism want to be treated fairly, listened to, and to feel positive about their future.
Supportive adults who are respectful, understanding and helpful
“Ihadthesupportfromtheteachers…andmyparentstalkedtotheschoolaboutmy condition.”19 year-old
“…theLearningAssistantwasreallyhelpful,shehadtwosonswithautismandshe hadawholebasketfulloffidgettoys…becausesometimesautismkidsfeellikethey havetomovearoundorfidgetortouchsomebodyandsomeneurologicalkids definitelywouldn’tlikethat,sofidgettoyskeepourhandstoourselves.” 9 year-old
“[Teachers]remindmetowearmyheadphonessoIdon’thavetoputupwithallthe noise.Idohavesomeonewhohelpsmeinmyclass…hehelpsmedomywork.” 9 year-old 9
“I’mintheeducationalsupportunitatmyschoolsoifIhaveaproblem,Ican just goto them and askforhelp…Myparents aregood. My dad talkstothe schoolaboutstuff,soI’mluckyIguess.”14 year-old
“…someoftheteachersarealsoveryconsiderateandtheyaskmewhatIwanttodo andstuff,butunfortunatelythat’sveryrareandIwishithappenedabitmore.” 14 year-old
Having individual needs recognised by understanding educators and receiving
appropriate support
The majority of participants faced a range of barriers at school or university due to their autism conditions. They wanted educators to listen and pay more attention to them about what support they need, as well as to be consulted about solutions to their own problems. “Idon’thavemorehelp.It’snoteasier.Idon’tlikeschool.Idon’tgetalongwithother kidsthere…Idon’thaveanEA[EducationAssistant]inmyclass.Iwanttohavehelp butnoone’slisteningtome.”9 year-old
“Sometimestheyarejustfocusedontheotherstudentsandnotreallyonme.
WhenIaskaboutitsometimesthey’relike,‘noI’mkindasickofyou,you
badgermetoomuch’,youknow? Andtryingjustbelike,‘goaway’butother timesthey’reniceandhelpful.”14 year-old
“Iftheywouldpayabitmoreattentiontome…becausealthoughIdon’tneed alotofacademichelp,I’mstillastudentat[thespecialeducationcentre].I’d likethemtospendmoretimeIguess…IhopethatI’mmorerecognisedin schoolandIhopethatmylifeisn’tgoingtobetoodifficultinthesocial things.”14 year-old
“Theteachersteachallthekidsthesamebutthey’renotallthesame.”11 year old
“Iwanttheteacher,orwhoevertolistenmore.Andevenifthestudentscould understandmoreaboutautismitwouldhelpalot.”14 year-old
“[Theteachers]alwaysgetannoyedbecause…Ihavetobedoingsomethingallthe time.Like,Iliketomovearound!”9 year-old
Participants want to feel safe to take educational risks. They know how they learn best, and want to be asked about what they need and involved in developing strategies to help them succeed academically.
“Noideashouldbestupid,kidswithautismgetafraidtotalksometimes.” 24 year-old
“Iworkbestwhenitcomesdowntovisualinstructionsliketellingushowtocookand such.”24 year-old
“IstruggleorgetnervouswhenI’mdoingtests.LikewhenIcan’tthinkofacertain answer…IjustwanttogivethegoodestanswerbutIcan’tseemtothinkwhatthe goodestoneis…it’sstressfulIguess.”22 year-old
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A group of young people involved with an autism support organisation said that they actively cultivated greater understanding and acceptance of autism in schools by sharing their lived experience with students and educators.
“Justgoingintothecommunityandeducatingkidsaboutwhatit’sliketohave autism…wegointotheschoolsandintotheirassembliesanddotalksonautism awarenesstoeducatethehighschoolsandtheprimaryschoolsaboutautism.” 22 year-old
A safe physical environment that supports learning and accommodates educational needs
Children and young people agreed that they learned best in surroundings that considered their barriers to learning, responded to individual needs and enhanced learning opportunities.
“Mynewschoolisbetterbecauseit’ssmaller.There’slesspeopleandit’salotmore quiet.It’salsoabitmoreeasy-goingthanmypreviousschool.” 15 year-old
“Iwouldhelpothersbylettingthemhavefidgettoys.Kidswithautism,they’revery fidgety…yeahithelpsthemstayfocused.”9 year-old
“I’dprobablysaylightsensitivityformyself.Soparticularlightingmaythrowmeoffso IalwayshavetocarryapairofsunnieswithmeeverywhereIgo.” 22 year-old
Many of the participants identified that the physical environment of their educational institution intensified their autism conditions, making them feel agitated, distressed and unable to concentrate.
“It’sabitannoyinghavingtheautism.Allthethingsthatareannoyingtome, like…whenI’minplaceslikeassembly…alltheclappingandthetalking.It’sthenoise. SometimesIthinkmynaturalhabitatwouldbealibrary.” 9 year-old
“Iespeciallyhatebeinghot.Peopleareannoyingtoo…IgetstressedandthenIget hotandthengrrrr.”11 year-old
“LikewhenI’minthelibraryandI’mtryingtostudyformydoubledegree,when peoplearetalking…IfinditdifficulttofocusonthetaskathandifIcanhear otherinformationcominginfromotherpeople…it’stoohard,soIprefertostudy athome.”19 year-old
Support to develop social skills within inclusive and connected educational communities
Having secure, healthy attachments and meaningful relationships at school were identified as being essential to feeling socially confident and included. Most wanted extra help to be included, to make friends and to socially interact with others.
“I’mnotreallyincluded.SometimesIfeelreallylonely.Someofthestudents don’tactliketheyevenknowI’mthere.”14 year-old
“Iplaybymyselfbecauseit’stoohardtoplaywithotherpeople.” 9 year-old
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“Theteacherforcesustodogroupwork…Idon’tlikeit…somekidsdon’t includemebutI’vegottenusedtoit.”11 year-old
Access to employment and equal treatment in the workplace
Participants were enthusiastic about their future employment goals. Many articulated an interest in pursuing their interests, refining their talents and achieving financial success.
“I’dliketobecomeanauthor…I’llwritenovels.”9 year-old
“I’mgoingtobecomeadeveloperofgamesandbecomerich…I’mgoingtobein SiliconValleywhereprettymuchallthedeveloperstherearereallyrich.”9 year-old
“Yeahemploymentandmentalhealth,they’rereallybigthings.They’rethebiggest thingsformeanyway.”18 year-old
“I’dliketobeasuccessfullawyerandI’malsointerestedingeneticsand neuroscience.Idon’tknowifI’llcombinethetwocareersbutIalsowanttoberichas well.Andreallysuccessful.”19 year-old
“MydreamsforthefuturearethatIjustreallyhopetobeacceptedbythewider community.I’dliketogointovoiceactingandI’dliketoshowcasemytalentsfor everyone.”22 year-old
“Formyself,[my goal is] togetafulltimeemployedjobandtobeabletoworkmost daysoftheweek.”22 year-old
Support to access inclusive employment
A few young people in the consultation were grateful to receive help to find employment, and to work for inclusive employers who understood and accommodated their autism conditions.
“I’mverygratefultobeabletoworkinthehospitalityindustryintheplacewhereIam becausethey’retheonlycaféIknowthatactuallylooksafterandcatersforthoseon thespectrum.”22 year-old
“InmyjobthatIjustgotwe’reanequalopportunityemployer…theyemploypeople withdisabilitiesandtheladywhorunsitIbelieve,haslikeadegreelikea psychologistorsomething,andhelpsthosewithadisabilitytoworkandtofindnew jobsaswell…Allthestaffmembersareevaluatedasequalsowegetasayinwhat wedoonsiteandoff-site.”22 year-old
“Mycurrentsupportisthe[name].Theyhelpwithmefindingajobandbeingina socialgroup.”22 year-old
Barriers to employment for autistic young people
Participants identified a range of obstacles to employment that were a consequence of their conditions of autism.
“Wellweneedhelpwithgettingtransportandlikegettingajob…becauselikeit’s hardifyoucan’tuseTransperthbecauseit’stoonoisyorwhateverandyoucan’tget 12
toworkanyotherway.SoIhadsomeonewhousedtodrivemetomyjob.” 24 year old
“Igetnervous[in interviews] orIstruggleabitIjustwanttosoundlikeI’mokay,like I’mnormalorwhatever.It’shardbecauseIgetnervousandthenIcan’tlike,speak.” 24 year-old
“Sensoryoverload…It’sreallydistressing…Ican’tgoanywherewhereit’stoonoisyand there’sbigcrowds.Iftoomanypeoplearetalkingatonceorthere’slotsofnoiseon thebusorsomewhere,Idokindofgetoverstimulated.”22 year-old
Discrimination of autistic people in the workplace and ill-informed employers
A few young people experienced harsh judgement from employers who underestimated their capabilities and strengths. They preferred to keep their autism conditions quiet or work for themselves rather than risk disrespectful treatment and face discrimination. “IusedtoworkasakitchenhandandwhenIdisclosedmydiagnosisIgotdemoted onthespot.SonowIdon’tdisclosemydisorder,becauseIcangetawaywithnot disclosingitsoIelectnotto…Ithinkthehospitalityindustryisprettydodgyinthat respect.”19 year-old “Iguessifyourunyourownbusinessthenyoueliminateanypotentialfor discriminationorwhatever.”19 year-old A lack of employment opportunities for autistic young people
Some participants experienced discouragement and expressed frustration due to a lack of employment opportunities.
“Idon’thavepaidemployment.I’vebeenlookingforoversixyearsbutI’mstilltrying tofindajob.”24 year-old
“Resumesandjobinterviews.Ijustdon’twantthatanymore,that’sjustnotthetrue wayofgettingajob.”24 year-old
“Idon’thaveajobbutI’mdoingsomearttokeepmyselfsane.”18 year-old
Support to live an independent and successful life
The children and young people were unanimous in saying they want empowered, autonomous lives and need support from other people to help them fulfil their goals.
“Mydreamforthefutureistogetmylicence,maybelearntoliveindependently,and maybelearntocooksomerecipesonmyown.”21 year-old
“MostofthetimeIhavethecontrolovermydisorder…likeIthinkImakemyown decisionsandhavecontrolovermyownlife.”15 year-old
“…mysecondarygoalistobuilduptheskillsforlivingalone…Istayedin[name],I hadasocialworkercomebyandhelpedwithmytimetheresothatwasokay.AndI’m goingtotryagainsoonbylivingwithagroupofpeople,sowe’llseehowthatgoes.” 24 year-old
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Social connections and access to community activities
Children and young people with autism want to feel connected, be empowered in community activities and events, and respected in organisations and the wider community.
Barriers to making friends and maintaining strong connections with social groups
Overwhelmingly participants spoke about a range of barriers in social situations with peers, including peers who misunderstood their condition and were insensitive, difficulties connecting with others, and challenges in navigating friendships with their peers who did not have autism (often described by participants as ‘neurotypicals’).
“…youhaveamoredifferentbrainthanotherpeople,likeneurotypicalpeople,so sometimesitmakesithardtobefriendswithcertainpeople…insomewaysbeing differentisgoodbecauseyougetextraspecialhelp…butsometimesit’sharder.” 9 year-old
“Socialcontactishard.Kindofmakesyoufeelalienatedattimes…Likethe awkwardnessofnotbeingabletoconnectwithpeopleandnotknowingwhatmakes otherpeopleconnectwitheachother.”15 year-old
“Withneurotypicalsyou’resometimesmasking…likecamouflaging,youhavetoact normalandthatcanbetiringsortofbecauseyoucan’tjustrelaxandbeyourself.Like I’malwaystryingtofigureoutwithneurotypicalsifI’mdoingok,likeifI’mnotinfo dumpingtoomuchandannoyingthem.”22 year-old
“Igettheimpulsetoinfo-dumparoundmyneurotypicalfriendsandthat’skindofhard formebecauseIwanttoactnormalbutIusuallygettheurgetoinfo-dumparound themaboutmyspecialinterestsandI’mnotsurehowwelltheytoleratethat…I’ve triedhavingfriendshipcircleswithneurotypicalpeopleandtheydon’tusuallylastvery long”.18 year-old
“No,[peers] don’tlistentome…I’djustratherdothingsonmyown…Yeahit’s frustrating.”11 year-old
Connecting with peers with autism
Children and young people described the value of having peer relationships with other young people with autism, and felt that they could relax and be themselves in these friendships.
“Havinganetwork,havingthesupportofpeoplewhohavethesamecondition…this group…isreallyimportant.We’vebeentogetherforabouttwoyears.”22 year-old
“It’sbetterhavingautistickidswithautistickidsthanautistickidswithnormal kids…becausewejustcopebetterwithautistickids…atleastIdo.It’sjusteasierto communicateandeveryoneunderstandseachother…Maybeit’sbecausewe understandwhateachotherfeels.”9 year-old
“It’sreallyimportanttotalktootherpeoplewhoarelikeme.” 19 year-old “I’mlucky…thisgroupisgood,andIhavemyfriends,soyeahI’mok.” 18 year-old “…whathelpsishavingagroupoffriendsIhavenow,wealwaysinviteeachotherout everyweekandgosomewheredifferenttocatchupeachweekandwealwaysmake surewecatchupsowecanseeeachother.”22 year-old
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Strategies that support children and young people to connect with others
Participants who had help to improve communication and practice social skills explained that they were calmer and interacted with others more easily.
“IguessI’mmorecalmaroundpeoplenow.MostofthetimeIguesslikewithmylittle quirksandstuffwithmysocialinteractions…it’sjustawkwardkinda…Mostlyaround eyecontact.Keepingupaconversation,thingslikethat.” 15 year-old
“Ithelpstohavequiettime.Tobebymyself,awayfromitall,justbeingmyself,that helpstocalmmedown.Justbeingawayfromotherpeoplegivesmetimetocollect mythoughts,itjusthelpsbeingawayfromthetriggersofit.CalmingmedownsoI’m betternexttimeinsocialinteractions.”15 year-old “Isupposeithelpswhenyoutrynottoletthediagnosisgetintoyourpersonality…like notbotheringyourselfwiththesymptomssomuch…notconcentrateonthe problems.”15 year-old
“Yeahpeoplelistentome…Ijusttryandmakeitasdirectaspossible.Itrynottobeat aroundthebushtoomuch.”15 year-old
Access to community activities and public events
Children and young people in the consultation said they want community events and activities to be accessible for people with autism. A few participants identified events that specifically cater for people with autism but most of the participants expressed dissatisfaction with community happenings that excluded them from being involved.
“Ilookforwardtomorecommunityevents,especiallymakingthemmoreaccessible forpeopleonthespectrum…theonethingImisswaslikethePerthSkyworkswhen theyhadthequiettentsetupifanyofmyfriendsneededtoduckintothequiettent.” 22 year-old
“Theyshouldmakeplaceslikeshoppingcentresmorequieter.”18 year-old
“Noway,Ican’tcatchpublictransport…Toomanypeople,toonoisy!” 19 year-old
Greater understanding of autism in the wider community
Throughout the consultation, children and young people said they want people in the wider community to demonstrate an understanding and acceptance of autism. To reduce the stigma they want to be included, respected and appreciated for who they are.
“Autisticpeoplethinkdifferentlybutthere’snothingreallywrongwithus,it’sjusthard whentheneurotypicalworldtriestomakeusliketheminsteadoftryingtohelpus dealwiththeworld.”22 year-old
“Aneurotypicalpersonissomeonewhodoesnothaveautismandassumesthattheir viewoftheworldiscorrect.”22 year-old
“…thereneedstobemoreeducationforthegeneralpubliconautismspectrum disordertoraisetheprofile.”19 year-old
“Iguess…educatingthecommunitythatit’sokaytobedifferent.” 18 year-old
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“Theredefinitelyneedstobemoreeducationinmychurchforpeopleinmyyouth groupinmyage.It’slikeI’mnoteventhere,likeI’minvisibletothem.”24 year-old “Justlike,forgettingaboutallthestigma.Also,justacceptancereally,ofthereal person.”15 year-old
Support people who are caring, competent and capable of taking action
Overwhelmingly participants agreed that in all aspects of their lives, they were best supported by people who had a clear understanding of autism and showed integrity. “Ithelpswhenpeopleknowabitaboutautism,likewhatit’sabout,whatthetraitsare sotheyunderstandmore.Iguessgettingridofthestigma…Understandingthe disorder.Yeah,otherpeopleunderstandingitmoreandyourselfunderstandingit, whichhelpsalot.”15 year-old “Whenpeoplehaveabetterunderstandingofeachother,theyjustgetalongbetter.” 11 year-old “Ithinktalkingthetalkbutnotwalkingthewalk,yousayyou’lldosomethingbutyou don’tendupdoingit…yeahit’sbad.”19 year-old Family and parents were most commonly identified as providing the most effective support because they had the skills and motivation required to help them.
“I’mluckytohavemyfamily…Mymumendedupgoingtothe[NDISoffice]andsitting thereuntilshegotsomeonetohelpus,she’sreallystubbornlikethat!” 19 year-old
“Myparentsarereally,reallyhelpful.”14 year-old
“…myparentshelpedmealot.Theyareextremelyimportant.”19 year-old
Knowledgeable and experienced support workers who appropriately responded to the individual needs of children and young people were considered highly important.
“…mysupportworkersarereallyimportantbecausewithmyautismsupportnetwork that’sreallyhelpedbecauseI’vekindofgrownasapersonandprogressedandstuff andlearnednewskillswithwhatI’mlearning.”19 year-old
“Mysupportworkersarepeoplethatcomeandhelpmeout.”19 year-old
One young person, who volunteered to mentor other children with autism, described the experience as beneficial for everyone involved.
“Kidsneedmentors.LikeImentoredacoupleofkidsthatIknewfromthecentreI wasat.Andtheparentssaidithelpedthembecausetheirkidswereabletotalkto someoneelse,notjustthemandnotjustthestaffwhothey’reusedto.”22 year-old
A more effective National Disability Insurance Scheme (NDIS)
Children and young people recognised the importance of NDIS funding for autism specific services that provided them much needed help with their conditions. However, the majority reported negative experiences with the NDIS, including unreasonably long waiting times, confusing processes and lack of clarity around eligibility to access support.
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“Ithelpswiththingslikethis(autismsupport)andpeoplewhohelpme…itwasjust annoyingthatittooksolong.”18 year-old “SotheNDISisnotveryuser-friendly.”24 year-old “…inmyexperiencemymumandIfounditreallyhardtogetfundingbecauseIwas onlyaLevel1ontheDSM-5,soIdidn’tneedthatmuchhelpbutwefounditreally hardtogetholdofsomeoneintheNDISandwhenwedidtheykeptgivingus differentinformationanditwasreallyconfusing,soyeah.” 18 year-old “WellIwassupposedtogethelpfromtheNDIS,likeIhadallthediagnosisand doctorsreportsandthatbutittookmorethanayeartogetfunding.”24 year-old “ThereseemstobealotofmisinformationfromtheNDIS,likeforinstancemyfriend whoisalsoautisticwastoldhedidn’tqualifyfortheNDISsupportanymorebecause hewasatuniversity.Ifhedidn’tgointhereandinterrogatethis,heprobablywould’ve droppedoutofunibecausehe…neededhelpwithhousingandtransportbecauseof hisdisorder.”19 year-old The experiences of the participants in this consultation cannot be considered representative of all children and young people with autism, however their reflections provide important insights into the lives of those with autism, and their views should be heard, respected and valued.
Their views highlight the need for more effective mechanisms for children and young people to give their feedback, share concerns and be involved in making decisions about their own health and mental health, education, social interactions, employment, and how they choose to be involved in the wider community.
“…doingthis[consultation]helpsbecausekidsdon’tgetaskedenoughaboutwhat theywant.”9 year-old
“Ithelpsifotherpeoplemakeyoufeelempowered…likeaskyouwhatyouwantand whatyouneed…andithelpsifthey’reempathetic,notjustsympathetic.Likepeople thatcanrelatetoyoupersonallyeitheronthespectrumorunderstandthespectrum. I’vebeenfortunatetohavepeopleinmylifelikethat.”19 year-old
“Whenthere’ssomethinggoingoninyourlifeandyoudon’thaveanycontroloverit, that’swhenthingsgobad…somepeopleIknowjustgettoldwhattodoallthetime andtheydon’thaveanycontrolovertheirlives,sothatsucks.” 24 year-old
Other consultations with children and young people
Springboard consultation
In 2013 the Commissioner consulted 17 autistic young people from WA aged 12 to 19 years from Springboard Youth and Autism Community Centre as part of the SpeakingOutAbout Disabilityreport.16 Young people participated in a variety of focus groups and workshops and were asked about their lived experiences with autism. Similar to other consultations, they pointed out that they are all individuals who want to be asked about what they need, and can achieve remarkable things with the right support.
”Thosewithadisabilityarenotlimited,itjustopensotherdoorsofunimaginable abilities,talentandpotential.”16 year-old
Many of the most important issues for the autistic young people in 2013 were consistent with the findings from this consultation. Young people said they want:
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support to have meaningful relationships with friends support from understanding families help at school to overcome difficulties associated with autism conditions to be involved and accepted in social activities more support with mental health better understanding of autism in the wider community.
Other issues raised by the children and young people from the Springboard consultation included:
Resilience
“Uskidswithdisabilitiesarestrong.I’ma14year-oldgirlwithdreamsandhopeslike anyother14year-oldexceptIwaswiredadifferentway.Itdoesn’tmakemeany lessofaperson.I’mjustdifferent,butaren’tweallunique?” 14 year-old
Social networking
“Aplacecalled[name]ontheinternetiswhereIcreatecomicstoexpressmy opinionsontheworld.”19 year-old
Romantic relationships
“OnethingIfinddifficultistryingtofindsomeonetolove.”17 year-old
Funding for support services by capable professionals
“Easierfunding.Wearehumanbeings,notgovernmenttoys.Stopusingcertainterms torefertous.Treatusasyouwouldotherpeople.”17 year-old
“Gettingspecialtreatment,ifnottreatedwithsubtlety,willmakethepersonfeel differentinthatway,whichisnotdesirable.”15 year-old
Autism specific community activities and events
“Byhavingmorepeople[with autism]runningmoreyouthclubs.”19 year-old
“Autisticrugbyprogramsandfooty.Neighbourhoodsforautistickidssowedon’thave haters.”17 year-old
Aboriginal and Torres Strait Islander consultation
In 2019 Macquarie University conducted a consultation with families of Aboriginal and Torres Strait Islander children and young people with autism, giving a voice to their experiences and identifying areas of further research and improved support.17 WeLookAfterOurOwn Mobis informed by in-depth, semi-structured interviews with 12 families with 16 children and young people aged between two and 22 years with a range of autism conditions. Participants lived in diverse areas across Australia including the Australian Capital Territory, Victoria, New South Wales, Queensland, Northern Territory and the Torres Strait Islands.
The families of autistic children and young people in this study raised issues that complemented those raised in the Commissioner’s consultations, however they highlighted a range of specific considerations for Aboriginal children and young people:
more information about autism in Aboriginal communities better support for parents and families improved access to flexible supports and services across the lifespan more Aboriginal personnel in health, education and disability services enhancing children’s right to cultural identity
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culturally safe and respectful interactions with services and institutions more research that listens to the voice and experience of Aboriginal children in autism.
Autism Spectrum Australia (Aspect) consultation
The research project conducted in 2013 by Autism Spectrum Australia (Aspect), surveyed 100 high functioning young people with autism (aged 12 to 17 years) and 65 parents across Australia about their life experiences, support needs and future aspirations.18 Findings identified areas of need in education, health, employment, social and community engagement, service availability and support to pursue future prospects.
Young people with autism and their families suggested that support services could be improved by:
asking them what they need increased access to facilities more availability of professionals better coordination and affordability improved autism training and more understanding professionals.
Autistic young people and their families called for:
more funding to access support services increased educational assistance help with employment additional support to live independently a national autism awareness campaign.
Final considerations
The Commissioner acknowledges the Committee’s inquiry into the services, support and life outcomes for autistic people in Australia and the associated need for a National Autism Strategy. The following points have been made through the Inquiry process.
The need for a National Autism Strategy
The needs and experiences of children and young people with autism should be central to the development of a National Autism Strategy. Children and young people with autism would benefit from a national organised approach that increases the rights of all children and young people, invests in coordinated action, and adequately funds mechanisms such as:
equitable and timely access to autism diagnosis a consistent best-practice diagnostic assessment protocol early interventions for all children targeted supports for priority populations of children and young people (including those who are vulnerable or disadvantaged) ongoing research and coordinated data tracking strategies to hear the views of children and young people with autism and their families.
In addition, an oversight body with functions that monitor system performance and for example manage workforce training and accreditation would provide a valuable opportunity to greatly improve outcomes for autistic children and young people and their families.
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This National Autism Strategy should also include a clear commitment to child safety and the need for organisations working with children and young people to adhere to and implement the National Principles for Child Safe Organisations.
Health and mental health
Children and young people with autism recognised the importance of their wellbeing and having easy, equitable access to appropriate health and mental health services. They would benefit from: appropriate services with understanding, well-trained health and mental health professionals accessible information and practical support for children and young people and their families to link into health and mental health services in the community prioritised mental health support, including mechanisms that identify autistic children and young people experiencing mental health conditions, e.g. autism specific assessment.
Education
Participants in the Commissioner’s consultation said they need inclusive educational institutions that have autism specific training, provide safe physical spaces, and mechanisms to help them develop positive relationships with peers. They want: caring and well-informed adults who are respectful, capable and effective to be consulted about individualised support to overcome educational barriers greater understanding of autism and more empathetic responses within their educational community physically, emotionally and academically safe learning environments help with social interactions and making friends.
Employment and independent living
The rite of passage of employment and living independently are important to young people and they want help to find meaningful work and live autonomous lives through: supportive employment programs and workplaces that demonstrate an understanding of autism help to overcome individual barriers to employment raised autism awareness in workplaces practical support to live independently.
Social connections, participation and community understanding of autism
Autistic children and young people said that miscommunication and the lack of understanding from others creates some of their greatest challenges. They want: support to develop communication and social skills to improve interactions with others help to be to be seen, heard and treated with respect within services and in the wider community public promotion of autism awareness.
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A more effective National Disability Insurance Scheme (NDIS)
NDIS funding was considered essential to accessing critical autism specific services for autistic children and young people, however their experiences prompted suggestions for improvement such as: reduced waiting times to access NDIS funding and support more accessible information and clearer processes greater understanding of autism within the NDIS.
Ongoing role of the Commissioner
The Commissioner works closely with the WA community to advocate for all children and young people to live in a caring and nurturing environment, protected from harm and exploitation.
Respecting the rights of children and young people with autism is the responsibility of parents, families and professionals across all sectors and levels of the Australian community. All children and young people have a right to be safe, to belong, to be listened to and to contribute to decision-making in all areas of their lives. The Senate Select Committee on Autism review is a positive opportunity to ensure these rights are recognised and acted upon, within the system and by all parties and professionals involved.
The Commissioner looks forward to reviewing the Senate Select Committee’s report on its completion.
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Endnotes
1 Both terms ‘autistic person’ and ‘person with autism’ are used throughout this report to respect the choice of language that individuals use about themselves. 2 Australian Institute of Health and Welfare 2017, AutisminAustralia2017,Cat.No:WEB187. Canberra. 3 Australian Bureau of Statistics 2018, “Autism in Australia”, Disability,AgeingandCarers,Australia: SummaryofFindings,Canberra. 4 Ibid. 5 National Disability Insurance Scheme 2019, COAGDisabilityReformCouncilQuarterlyReport31 December2019,Q2 2019-20. 6 Australian Bureau of Statistics 2015. “A Profile of Autism in Australia”, AutisminAustralia Disability,AgeingandCarers,Australia:SummaryofFindings. ABS cat. no. 4430.0. Canberra. 7 National Disability Insurance Scheme 2019, COAGDisabilityReformCouncilQuarterlyReport31 December2019,Q2 2019-20. 8 Australian Institute of Health and Welfare 2017, AutisminAustralia2017,Cat.No:WEB187. Canberra. 9 National Disability Insurance Scheme 2019, COAGDisabilityReformCouncil,QuarterlyReport,Q2 2019-2020. 10 Available at https://autism.telethonkids.org.au/autismregister/ 11 Available at https://www.autismcrc.com.au/knowledge-centre/resource/national-guideline?gclid=EAIaIQobChMIqfns5bu66gIVUiUrCh0AtAw6EAAYASAAEgKo0PD_BwE 12 Magiati I et al 2012, Early comprehensive behaviourally based interventions for children with autism spectrum disorders: A summary of findings from recent reviews and meta-analyses, Neuropsychiatry,Vol 2 No 6. pp. 543-570. 13 Taylor L, Brown P, Eapen V et al., (2016), AutismspectrumdisordersinAustralia:Arewemeeting bestpracticestandards?Autism CRC, pp. 5-9. 14 Lilley R et al 2019, WeLookAfterOurOwnMob–AboriginalandTorresStraitIslanderExperiences ofAutism, Macquarie University, Sydney. 15 Commissioner for Children and Young People WA, 2013, SpeakingOutAboutDisability-Theviews ofWesternAustralianchildrenandyoungpeoplewithdisability. 16 Ibid. 17 Lilley R et al 2019, WeLookAfterOurOwnMob–AboriginalandTorresStraitIslanderExperiences ofAutism, Macquarie University, Sydney. 18 Autism Spectrum Australia (Aspect) 2013, WeBelongToo:TheExperiences,NeedsandService RequirementsofAdolescentswithAutismSpectrumDisorder.
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